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Kevin Fech makes a banana pudding with vitamins and supplements for his 19-year-old son Tyler, who has Down Syndrome and is autistic, at their home in Cudahy. Fech is paid through Medicaid to assist his son in tasks that Tyler cannot perform himself because of his disability.
Mike De Sisti/Milwaukee Journal Sentinel

Kevin Fech assists his 19-year-old son Tyler with brushing his teeth. Fech believes it is the best option to provide the care for his son himself because it would be challenging to find acare worker to come at 6 a.m. to get Tyler ready for school at $10 an hour.
Mike De Sist/ Milwaukee Journal Sentinel

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Kevin Fech feeds a banana pudding with vitamins and supplements to his 19-year-old son Tyler, who has Down syndrome and is autistic, at their home in Cudahy. Instead of using an outside personal care worker who would be a stranger, Kevin gets paid through Medicaid to assist his son in tasks that he cannot perform himself.(Photo: Mike De Sisti, Milwaukee Journal Sentinel)Buy Photo

MADISON - Jessica Nell relies on a stranger to help her get in and out of bed every day.

If no one shows up to help her, the 29-year-old Green Bay resident is left immobile — potentially for hours.

Nell, who has cerebral palsy and uses a motorized wheelchair, is one of thousands of Wisconsin residents who need personal care and home care workers to perform daily tasks they can't do on their own. But finding a worker to come to an individual's home has become increasingly difficult in Wisconsin due to a lack of available workers.

"There's constant issues. People not showing up, people showing up at the wrong time," Nell said. "It's endless."

The lack of workers has reached crisis levels in Wisconsin and across the nation, according to long-term care and home care organizations. And Gov. Scott Walker has recommended a 2% increase for each of the next two years, but advocates say more is needed.

A recent survey by disability advocates found that 85% of disabled people and older adults didn'thave enough workers to coverall their shifts. More than 40% of the 500 people surveyed couldn'tfind a worker seven or more times a month, according to the review by Survival Coalition, a collection of disability organizations.

Advocates and health associations have pinpointed low wages without benefits as the cause of the shortage. There's also an overall lack of appreciation for workers who fill these demanding jobs, they say, leading workers to not view the job as a career.

The workers help with showering, getting dressed, cooking, cleaning, driving and other tasks. Often they are paid through Medicaid, a collection of health care programs funded by the state and federal governments.

Personal care workers typically get paid $10 to $11 an hour, usually without health care benefits, to perform the challenging job of lifting people in and out of bed and helping them with toileting needs, according to Kevin Fech, a team manager with a state personal care program.

"These are the hardest working people and they get paid less than what people make at a fast-food restaurant," Nell said.

Agencies that manage these workers sometimes lose over half their staff in a year, experiencing a turnover rate of 50%, according to the Wisconsin Personal Services Association, which represents personal care providers.

At the Arc of Fond du Lac — one of the state's largest care providers for people with developmental and intellectual disabilities — the turnover rate has increased from 5% to 25% in recent years.

David Boelter, executive director at the Arc, has taken steps to retain and recruit high-quality workers in the midst of the shortage. The Arc offers employee referral rewards, sign-on bonuses and health care benefits.

"The more turnover we have on our staff the worse effect it has on our clients," Boelter said.

Some people employ a friend or relative to provide services.

Fech gets $10 an hour to care for Tyler, his 19-year-old son who has autism, Down syndrome and is nonverbal.

Fech believes it is the best option to provide the care for his son himself because it would be challenging to find a care worker to come at 6 a.m. to get Tyler ready for school at $10 an hour. If a worker was late or didn't show up, Tyler wouldn't get to school on time.

Personal hygiene suffers when care workers don't show up.

"My son doesn't have thecognitive ability to brush his teeth," Fech said. "If we weren’t there to help him brush his teeth ... then (he) would start having gum disease and start having abscessed teeth."

Increase possible

State Rep. Jimmy Anderson (D-Fitchburg) said he once talked to a woman with multiple sclerosis who had to decide if she wanted to shower or eat each day during her Medicaid-funded hour of care because of state cutbacks.

"I think it's inhumane. It's damn near disgusting," Anderson said.

Anderson became paralyzed from the chest down after a serious car accident. He is not on Medicaid, so he pays out of pocket for home health care workers.

Under current law, service providers, like the Arc, get reimbursed through Medicaid at a rate of $16.08 per hour. Walker's proposed 2% budget increase would raise the rate to $16.40 in 2017-'18 and $16.73 in 2018-'19.

Advocates, although grateful for any increase at all, say the bump is not enough to make any real change. A better rate increase would be around 15%, they say.

"It’s a step in the right direction but still very inadequate," Boelter said.